Barbara's Blog: A story of memory assessment and why being person-centred is vital

“I think this will be a waste of time” said my Dad as we set off for his memory assessment appointment today, “there isn’t anything wrong with my memory”.

“Well let’s see” I replied, “your appointment is with a nurse, she might be helpful”.

Looking at the appointment letter as we drove to the clinic, he read (half to himself) “Your appointment will last for approximately an hour and a half. What are they going to do to me for an hour and a half?”

“I don’t know, we’ll find out”.

We have waited many months for this appointment. My Dad had a small stroke in June last year, which resulted in his admission to A&E. After a CT scan and the MoCA (Montreal Cognitive Assessment) test – he scored 17/30 - he was discharged with a letter and medical report for his GP and this had prompted the referral.

The appointment was for 1.30pm. We arrived early and sat patiently in the waiting room. At 1.35pm my Dad remarked “She’s late. I’ll wait until 2pm, if she doesn’t call me in by then, we’ll leave”. A few minutes later, Nurse Caroline called my Dad’s name.

We went into a little interview room and sat down. After introductions there was some paperwork to complete, a list of his medications to hand over, and then Nurse Caroline began to ask some questions.

“You’ve been referred because you’ve noticed some recent changes in your memory” said Nurse Caroline, partly as a statement, partly as a question. “I haven’t noticed any changes” said my Dad, “I don’t think there is anything wrong with me”. Nurse Caroline continued, “Maybe your wife has observed some problems? Perhaps your GP has some concerns?”. “There’s nothing wrong, in my opinion, there isn’t any point in me being here” replied my Dad.

“My role is to gather information” explained Nurse Caroline, “there can be many causes of memory problems. I am looking for any recent changes in mood, physical illness, trauma, and any signs of emerging dementia”.

My Dad was looking distinctly uncomfortable at the mention of the word ‘dementia’.

From the start of the consultation, I was concerned to ensure that this process would be person-centred. I wanted my Dad to feel respected and in control. Nurse Caroline took this on board. She checked with my Dad, at this point (and several times subsequently) that he was willing to continue with the interview. He could withdraw at any point she emphasised. “Yes”, he said “I suppose I’d like to carry on”.

Next there were lots of clinical questions: Do you sleep well? Yes. Have you noticed any changes in your appetite? No. Any weight loss? No. Do you have headaches or migraines? No. Mobility problems? What do you mean, walking? (Caroline nodded). No, I can walk alright. Have you noticed any problems with your balance? No.

Have you ever had a stroke? No.

“Dad” I gently intervened “you know when you had that funny turn, last June, when Mum found you on the landing looking for me, and I wasn’t there. You were a bit disorientated and confused, and you’d slept in the wrong bed. Do you remember? Mum rang 111. Then you were taken by ambulance to hospital. That’s when you had the scan, which showed that you’d had a small stroke”.

“I don’t remember that at all” said my Dad.

Have you ever had a head injury? continued Caroline. “No” said my Dad.

Again, I intervened, “Well you were a boxer Dad….”.

“Yes, I was, I was a boxer. In fact, I was very successful. I boxed for the local Boys’ Club and then I boxed in the Army”.

This was the turning point. We’d hit on a subject that my Dad was happy to talk about. Something that he was proud of, a huge achievement in his life.

“Were you ever knocked out?” asked Nurse Caroline. “Knocked out cold?” said my Dad “Yes, a couple of times! But I won many more fights than I lost”.

Nurse Caroline went on to ask my Dad about his life. Where he went to school, about his family, his work, his hobbies and interests. By this time, he was fully engaged, in full-flow conversation. Nurse Caroline had gained his approval.

There followed a raft of cognitive tests: What month is it? April. What year is it? 2018. What season is it? Winter, although it should be spring ‘cos it’s March. Who is the current Prime Minister? Theresa May (expletive). Who was the woman Prime Minister in the 1980s? Margaret Thatcher (expletive). What was the name of the president of the United States who was assassinated in the 1960s? John Kennedy. Count backwards from 100 in 7s. (He did surprising well with this, he’s never been good at arithmetic).

Name as many animals as you can in one minute: tiger, lion, elephant, pig, weasel …. Name as many words as you can beginning with the letter P in one minute. Pipes, parachutes, peanuts, parasols, porcupines … parachutes, did I say parachutes already?

Word-finding was a struggle: he couldn’t get ‘kangaroo’ when shown a picture of a kangaroo, although he knew it was an Australian animal that did boxing; and on a page of pictures to be identified, his answer was "that's an animal" for each animal, he couldn't be specific, although when asked to do so, he could point out a camel, rhinoceros and alligator.

It took the full one and a half hours, as anticipated. Next step: Caroline will have a meeting with the multi-disciplinary team, maybe another scan will be needed, but maybe not, and then my Dad will have another appointment, this time with the Consultant Old Age Psychiatrist, when he (and I) will receive the diagnosis.

Is my Dad happy about this? Well, probably not, but he’s going along with it. We left smiling and headed to Costa for a coffee and toasted sandwich and a de-brief. He thinks Nurse Caroline is ‘alright’.

It’s been an emotional day. The moment when Caroline asked about his mood was the hardest. “Have you been feeling low in mood?” My Dad reflected on the question in silence. “All my friends are dead; my brothers are dead”. (He is the youngest of four brothers). “I’m the last of the Mohicans” he quoted his famous saying with a smile. “I suppose I do feel quite lonely”. Caroline responded with some empathetic words, but my Dad was looking out the window admiring the view. In that moment, his feeling of sadness was palpable, and mine was too.

So, we are on ‘the journey’ as they say. My Dad is 88. I am very proud of the way he handled today. I’ll be alongside him every step .

Published with the permission of Mr Jack Stephens

What was your experience of memory assessment? Please do get in touch to let me know. If you have any concerns about a family member, or questions about the process of assessment and diagnosis, you can email me at askbarbara@unforgettable.org

Tags:

Comments

2 thoughts on “Barbara's Blog: A story of memory assessment and why being person-centred is vital”

Wow. I completely relate to this. My Mum is the same so somebody is coming in to give her a memory test (she refuses to attend) and I am dreading how she will react. Selfishly, I am dreading how she will be towards me afterwards.
Very difficult and upsetting times.

Hi Liz, many thanks for your comments. Do let me know how your Mum gets on with her memory assessment. Will you be with her at the time? The key thing is to encourage the person carrying out the assessment to find something that your Mum is happy to talk about. For my Dad is was being able to talk about his boxing accomplishments. I knew that by introducing this subject into the conversation, he would open up and be more happy to talk. The tension was then dissipated, which led to a more satisfactory conclusion that might otherwise have been the case. You can send an email to me confidentially at askbarbara@unforgettable.org All good wishes, Barbara